Sun is My Kryptonite

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Every summer around this time, I have to write my dedicated blog post about the summer sun.  The milder temperatures of Spring are long gone and it is hot hot hot.   This is a tough time for those with autoimmune disease and sun sensitivity.  I know those with Lupus and Sjögren's can find it particularly tough to manage during summer months. Flares, rashes, and exhaustion can all be caused by its rays. 

For me, the sun was once merely part of the background of my summer schedule.  Now, I would say it completely defines how I do almost everything.  It is certainly not convenient to have to be inside between the hours of 10:00 am and 5:00 pm each day and sometimes even later. 

The littlest bit of sun exposure from just walking cross the street (even with all my sun protective measures) can leave me feeling sapped of all energy and ill for a few hours if not more.  So yes, the sun is definitely my kryptonite.  I become completely useless when it gets the better of me.  I am also trying to be as careful as can be because I do not want to get a sun induced flare while pregnant.  A no flare pregnancy is a goal of mine!

I have many necessary sun protection measures in place and each year I add something new to my regimen.  I think this is partially true because my sun sensitivity has gotten progressively worse with each passing year.  Oh, and being pregnant seems to be upping me from super sensitive to super duper sensitive.  

This summer I have come to realize that being in the car on a sunny, hot day can be nearly as bad as being outside.  Now, I'm not the only one outfitted and covered to block those UVA/UVB rays, our car is as well.  I've purchased three car shades which now cover our passenger front seat car window and part of the back seat window as well. These shades at least make it possible for me to be in the car for brief periods on summer days without getting sick (Obviously, this only works when you can sit in the passenger seat).  

Window sun shades are relatively easy to find and are sold at places like Target and Amazon.  I'm currently using a combination of two roller shades and a cling shade in our car (click here and here for examples). I have them placed at weird angles to get the maximum sun protection possible and you can mix and match for what works in your car.  People might think we have a baby on board with all these sun shades, but that won't come for another few months :).

So here is my current compilation of daily sun protection measures.  I haven't even included extra steps for heading to the beach or the pool, but please feel free to add what is helping you prevent those summer sun induced flares and rashes.

1) SPF 30 or above sunblock with UVA and UVB protection -- Remember don't be shy about lathering it on and reapplying throughout the day.

2) Big floppy UPF 50 protective hat -- I love my Wallaroo hat that has held up for a number of years. 

3) Big sunglasses with UV protection -- Since I can't wear contacts due to Sjögren's, I use prescription sunglasses. 

4) Umbrella for walking outside -- And then you're always prepared for a summer thunderstorm. 

5) Keeping arms and legs covered when outside -- UPF clothes are always a good option even though they might not always be the most fashionable.

6) Staying in during peak sun hours especially between the hours of 10 am and 2pm -- For me, it is really closer to 10 am to 5 pm to be safe.

7) Sunshades for the Car -- Mix and match what covers your car windows best and hence gives you the most sun protection.  

8) Stay Hydrated -- While it's not exactly a flare prevention technique, having water with you at all times can help prevent dehydration. It's especially important for those with Sjögren's, who are already dealing with extreme dryness.

Is the Flare Finished?

Alright, I am slowly emerging from my flare.  Thankfully!  I've been out of touch here for too long. It has been a rough few weeks and as those of you know with autoimmune disease, flares and their duration are unpredictable. 

The first interesting thing about this flare is that it appears to have been initially triggered by the flu shot.  Yes, the flu shot.  Now, I know this might sound controversial, but bare with me, this is not my analysis but that of two of my physicians who specifically treat patients with autoimmune disease.

I got the flu shot and 48 hours later my autoimmune symptoms started acting up and then kept getting worse.  Within the next couple weeks, I knew I was in really trouble. I went from being in a position where I could largely manage my Sjögren's to being in excruciating neurological pain.  I had the good fortune of several relatively healthy months, so that I had almost forgot how severe and debilitating constant trigeminal nerve pain can be.  Well, that changed fast. Pain medication wouldn't even touch it.  My eyes became so dry and painful that I had to be put on steroid eye drops.  I stopped being able to read or use a computer all together and went back into survival mode.

Now, being the stubborn Gal that I am, I thought to myself at the time, I can manage this flare myself.  I won't contact my rheumatologist, there isn't much anyone can do for me.  But when the pain started to reach an 8 everyday and I couldn't leave my home, I changed my mind.  Well to be honest, my husband had to partially convince me that it was time to seek medical help.

I was hesitant to even mention the timing of the flu shot with my doctor. I expected my rheumatologist to think that I was nuts since I am so used to doctors touting the important benefits of the shot--particularly for someone who has so many health issues.  But I was surprised. He told me that vaccinations do have the potential to cause activation of autoimmune flares. He said this doesn't mean that you shouldn't get vaccines, or even avoid the flu shot, but there are risks.  (Note: This is in part why I have so much respect for my rheumatologist, he understands that there can be exceptions to the general medical wisdom.)

Then I talked to my eye doctor, who specializes in autoimmune disease. He also had a patient like me who went into a serious flare after getting the shot.  At this point, I was at least sure I was not the only patient who had this happen.  It was helpful to know, but also convinced me to write this post in case others have had a similar issues--however unusual it might be.

I want to be clear I'm not making any recommendation or generalization for other Sjöggies or autoimmune patients.  As I've written in the past, I do tend to experience what are often considered the "rare" or "unlikely" side effects from medications and procedures.  

I currently have my fingers double crossed that I'm on the other side of the flare.  I had to have a number of days of steroid infusions followed by a slow taper to get my overactive immune system under control.  As we all know, being on steroids have all sorts of unwanted side effects including lowering your overall immunity.  Not surprisingly, during this winter season where everyone seems to be sick, I came down with a super bad virus that included fever, cold, and stomach upset that left me flat on the couch for another week.  So here I am again, slowly rejoining the world after another autoimmune blip.  I'm hoping and praying that there aren't many of these interruptions in 2014!

Post Flare Recap: How I Got Through My Last Flare

I think that I can safely declare that my recent flare officially ended a couple weeks ago. Before announcing it on my blog, I wanted to make sure that this was actually the case and not just my immune system playing one of its sneaky tricks on me.  At least for me, half the battle is really just getting through these very difficult autoimmune disease blow-ups.  I thought I might mention a few of the things that helped me during this rough patch.  It could prove helpful to have this short list available for the next time, but I have my fingers double crossed that it will not be for some time.

When the flare started, it was a jolt to my system both physically and mentally.  How could I go from being in a pretty stable place to being stuck back at home, unable to read, exhausted and in pain? I had to remember how to get through sick days like these. I had done it before and needed to rely on my previous coping strategies.

This required me to re-adjust my routine.  No I couldn't write a blog post with such eye pain, but there were other things that I could do to keep my mind somewhat active while resting. Instead of reading and writing, I caught up on my favorite podcasts or listened to a book as opposed to reading one.  This helped me stay distracted some of the time. Whether listening to books,  TV shows, or podcasts, I tried to stick to those that had some humor and comedy.  When I feel rotten, smiling and laughing do not come easily.  But when I do laugh, it can give me a momentary reprieve from the pain and discomfort.  I can't tell you how many dumb jokes my husband tried on me during those weeks just to see a slight smile.

It's was also essential for me to keep making my daily to-do lists. Getting dressed deserves a check on the list (yes, even that is a chore when I'm having a flare) and so does napping.  Those of us who get them know getting plenty of rest can be crucial for getting over a flare, but it still takes a lot of reminding for me to let myself sleep during the day. These lists can be more helpful for me during a flare than when my health is better.  My flares are usually accompanied by some serious brain fog and it is more likely that i I forget to take my medicine if I don't write it down. Everything I get done during a flare takes extra effort so having a list helps me to recognize what I can and did accomplish at the end of the day.   While it might sound a little silly, a check off on my to do list is my equivalent of giving myself a gold star.  Maybe I should even design a gold star system for the next flare.

I tried to be diligent about writing in my gratitude journal (read more about gratitude journals here). Simply jotting down the good things in my life reminded me what is positive even when I am feeling crummy.  It's not the easiest thing to do when you are ill, but every bit of positive energy that I can cultivate goes along way.

While I couldn't meet my friends out for fun activities, I still tried to so some easy socializing. I invited one or two close and compassionate friends to come by for brief visits. I let them know that I might need to cancel in advance so there was no pressure if I felt too sick.  Their company buoyed my spirits, got me laughing, and helped me feel more connected to the outside world.

So that's the end of my flare talking for now! I am beyond thankful that this past flare ended, but I'll have these reminders for the next ugly one.  What were your strategies for coping with your last flare?  What types of things seem to help you the most? I hope I won't be re-reading the post for a while!

Living with Autoimmune Disease: Yoga I Did It

A few months ago, I wrote a post about the disappointment of not being able to attend my first yoga class in a number of years... despite my careful and meticulous planning to make sure I would be to make it.  Yesterday, it was a different story.  I made it to the yoga class!!!

I have been hoping to go to yoga for almost two months, but even the day of I didn't know if it would be possible.  The stars seemed to be aligning against me. The previous day was tough and I was in lots of neurological pain.  More broadly, I am in the midst of a flare and am more limited in what I can do than I have been for awhile.  Making matters worse, the weather was absolutely frigid.  Somehow, somehow, my body cooperated just enough. I made it.

It was my first gym or exercise class of any kind in three and a half years.  That's long for anyone, but for me that's a reminder of just how hard things have been. Before getting sick, I had always regularly exercised in some way whether it was dance, yoga, or running. Exercise used to be my release and my means of getting rid of my excess energy.  Yes, before becoming AutoimmuneGal, I was a hyperactive gal.

I approached the possibility of attending the class casually.  I didn't even put it in my calendar.  I was fatigued by the time the afternoon rolled around yesterday, but I decided to push through this time. It was worth it.

Perfect Plough Pose

The class was designed for people with arthritis. Ok, that doesn't exactly fit me, but I figured the teacher wouldn't push me past what I could do. I walked in and was the youngest in the room by decades.  Sometimes I say that I feel like having autoimmune disease means that I have a sense of what it is like to be in my 70s (even though I am only in my 30s). In that class it was literally true.

The class was pretty low impact, which is exactly what I needed.  The hour and half class consisted mostly of gently stretching, slow movements, deep breathing and meditation.  The teacher carefully guided us through the postures and helped us individually to make adjustments so none of them were painful.  It felt good to slowly move my rusty muscles and joints that I haven't focused on in ages.   I could feel them working hard even to hold basic poses.  I recognized many of the poses as lying downs versions of standing poses that I had done in my previous practice.  And while I used to do things like headstands, I found the low key, relaxing and supportive atmosphere of a restorative yoga class enjoyable.

The best part is that I left class feeling less fatigue than when I started.  If restorative yoga is something that I can do when I am flaring I certainly feel like I can plan to be back for more. This was a big accomplishment for me and I do hope I will be able to incorporate some gentle exercise into my life again on a regular basis.

New Find: Aveeno Baby Mineral Block

I generally don't do product reviews (and rest assured none of them are sponsored) but when I find something that's particularly helpful to me for my autoimmune related issues I do try to share it.

Sun protection is very important for those of us with autoimmune disease.  Many autoimmune conditions are sun sensitive such as lupus and Sjogren's and getting too much sun can cause or make flares worse.  I, like many others with autoimmune disease take medications which can further increase sun senstivity such as plaquenil and steroids.  While I definitely love the summer and warm weather (my joints do too), it is a balancing act to enjoy the outdoors without getting too much sun and hurting my health.

One of the problems that I have had is finding a sunblock for my face that does not cause me to either break out in unflattering pimples or to get a rash from one of its ingredients.  Of course, it also has to do its job of protecting me from the sun.  Over the last few months, I have tried many and have finally found one that seems to do the trick for my face.  It is Aveeno Baby sunblock stick SPF 50+.  As the name suggests, it is actually made for babies over six months of age, which might be part of the reason it does not bother my sensitive skin!

The Aveeno is technically a mineral block or sunblock as opposed to a sunscreen and I have recently learned that there is a difference.  A mineral block or sunblock sits on the surface of the skin and is not chemical  based.  It usually contains zinc oxide and/or titanium dioxide. These are the active ingredients in the Aveeno Baby sunblock stick.  Generally, sunblocks are less likely to irritate sensitive skin.  Sunscreens on the other hand are chemical based and have to be absorbed into the skin in order to effectively block UVA and UVB rays.  The downside of sunblocks or mineral blocks like the Aveeno is that they do not always easily rub in.  The Aveeno does leave a white film and I do have to use a little elbow grease to blend it in so that it can't be seen.

The stick is compact, easily transportable, and fits in a purse or a pocket.  Because it is not a liquid, there is little risk of it spilling all over your things.  I carry it in my purse and reapply every couple of hours.

Here's a link to the site if you want more information:  http://www.aveeno.com/baby-care/np/lotion/baby/spf50









*I have no relationship with any of the companies whose products are mentioned in this post*